Saturday, June 20, 2009

I'm feeling more confident with my DNR these days. Before the paper used to scare the shit out of me, knowing how final it is. I was so afraid to carry it around with me for fear that I would collapse and that would be the end of me. I wouldn't have time to say goodbye. I would fall, heart stop and gone.

Sorta like my step-son. He didn't have a heart attack, his heart just stopped (they are medically completely different scenarios). I'm not at all suggesting that there wouldn't be all this turmoil if he had a DNR or even some sort of Living/Biological - most young have absolutely no need for one. In fact, unless you've got some sort of terminal illness there is no need for a DNR. There is however, always need for a living will if you're an adult (over the age of 18). I get that people don't want to talk about and write these things because "it's morbid" but what's more morbid than sitting at a bed-side knowing if someone wants to live off machines?

I'm not at all drawing a parallel here to my step-son. In his case, we don't even know the neurological assessments. For all we know his brain could be intact, the CPR saved him and all he's doing right now is resting, deeply. But, if for a moment those test come out negative, then, the difficult questions come up. In this case there are 3 legal caregivers, three opinions! For the love of your spouse, partner, friend, family etc. stop and think about what you want for your living body and then write it out - by hand. (My cardio social worker said that if you can't afford a lawyer, that the less chances of instructions not being contested if it was written long-hand. Legal reasoning: it's easy to get anyone to sign something type-written, or copy a letter onto a signed sheetc, etc. Chances are someone can't be coerced into writing all their desires out long-hand).

In my case, had it been me, and the medics came and shocked my heart back the reality of me not having brain-damage and having a heart that would return to it's normal state (which is, ineffect, broken) are extremely slim. So slim that my medical team explained the options and for me a DNR at this stage of chronic terminal illness made sense. Doesn't mean I like it - it still scares me. G-d forbid it stops just like Thomas' did. That would be the end of me at that moment. No time for goodbyes.

Yet, I would not want my Wife to go through in the future with me what she's going through now. Albeit they are completely different situations. He's 17 and healthy, my the heart muscle is so enlarged... anyway. She doesn't need to go through this a third time in her life. Having some sort of guiding papers/directive won't make the situation any less emotionally staining or her soul, but it will guied her through, make some decisions less complicated when she'll be overwrought with grief.


Now that the adrenaline part of the (Thomas') urgency (rushing to make sure Wife caught the next available flight, the initial 24 hours, the defrost of the patient, etc.) is over, time settles in a black bear readying for hibernation. We're moving into the WAITING stage. Not the waiting-for-a-goal stage but the wait and see game. Waiting for him to wake up. Waiting about brain activity. Those results may simplify things. If there isn't any, discussions of end-of-life become an alternative. If there is some, we continue to hope and pray until he wakes up.

In the meantime, the Wife is starting from the beginning, hunkering down for a long wait: the beginning of Harry Potter. Her game plan is to read that to him, from the beginning. My game plan? I seriously need distractions and company as I wait here, alone, for the call that informs me if I fly out there or not.